Tag: HIV

An estimated 2 000 new HIV infections occur in young women and girls every week in South Africa. Two high-profile programmes are aiming to address this crisis. In this joint Spotlight/Health-e News Service special investigation, we go beyond the bells and whistles and ask what difference these programmes are really making.

Roughly 40km outside Durban lies the small town of Molweni. This is where a young woman, Nontokozo Zakwe – now 26 – grew up.

“One of the things I noticed growing up was that gender-based violence (GBV) was the norm,” she says. “And the mentality was: if it happens to you, get over it. If it didn’t kill you, you’re going to be okay.”

The first time ‘it’ happened to Zakwe, she was just 11 years old.

“We had two options on our walk back home from school: the road, or the short cut past the river,” she says. Most days she took the road; but one day, after staying late after school, she decided to use the short cut, because it was getting dark.

“Then this man, he raped me.”

Zakwe survived the attack and made her way home, where she lived with a number of cousins and siblings. Her mother worked in another province, she didn’t know her father at that point, and her grandmother could only afford to come home one weekend a month from her job as a domestic worker on the other side of the country.

“But being from the kind of community I was from, when I got home I decided to sleep. I cried myself to sleep,” she remembers.

A visiting aunt woke Zakwe up that evening, pulled back the covers, noticed blood, and asked the young girl what had happened.

“When I told her, she told me everything was going to be okay. I could tell in her eyes she was sorry for me and wished it hadn’t happened, but that she felt there was nothing she could do except tell me I was going to be okay,” Zakwe says.

“We were forced not to talk about things. Talking that could help us heal. One can imagine, these experiences – experienced by many young girls, around the country – can leave you vulnerable to HIV, teen pregnancy and other problems.”

At the age of 11, not even a teenager yet, Zakwe was expected to overcome the trauma of that violent experience, stay in school, and avoid early pregnancy, without any support – psycho-social, financial or otherwise – jn becoming a successful HIV-negative adult.

2 000 infections a week

It is against this backdrop of the lived experiences of many young women in South Africa that a staggering 2 000 new HIV infections occur in young women and girls every week. Over 70 per cent of new HIV infections in people aged 12 to 24 in sub-Saharan Africa occur in young women and girls, who overwhelmingly bear the burden of the epidemic, according to research done by Professor Ayesha Kharsany from the Centre for the AIDS Programme of Research in South Africa.

In South Africa, one third of young women and girls experience abuse, 60 per cent of young people do not have a matric qualification, and about 70 000 babies annually are born to girls under the age of 18, according to the South African National Department of Health (DoH).

It is being increasingly acknowledged that the contexts in which young women and girls live, which are often patriarchal and violent in nature, need to be addressed in order to make any meaningful impact on reducing new infections, and ultimately ending AIDS as a public health threat to the world.

Treatment and prevention campaigns alone, located in the health department, cannot by themselves address all the systemic drivers that make young women and girls more vulnerable to HIV than their male counterparts: poverty and gender inequality, as well as biological factors. These affect every facet of a girl’s life: her ability to stay in school, choose when to have children, her economic opportunities and the gendered and sexual violence experienced by women that is endemic in South Africa.

It is in this context that a number of initiatives, backed by billions in international aid, have been launched in South Africa. On the face of it, they aim to address the contexts in which young women and girls live in order to help them reach their full potential, including changing long-held perceptions in communities that leave them unsafe from violence and HIV.

It was only two years ago, when Zakwe joined the DREAMS partnership as an ambassador, that she began to receive the psycho-social support she needed 15 years ago.

DREAMS is a global partnership aimed at improving the lives of young women and girls in 10 African countries – with the ultimate aim of reducing the rate of new HIV infections in this group.

Another prevention campaign for young women and girls looking to tackle the societal problems driving their vulnerability to HIV is She Conquers, led by the DoH, launched by then-Deputy President Cyril Ramaphosa, and most famous for the controversy over a number of billboards commissioned under its name in Gauteng.

A grave historical injustice

In his response to the State of the Nation (SONA) debate on Tuesday 20 February, Ramaphosa, the newly-elected president, said:

“Another grave historical injustice that we need to correct is the economic inequality between men and women.

“It is a task that requires both a deliberate bias in economic policy towards the advancement of women and a fundamental shift in almost every aspect of social life.

“One of the programmes where we have sought to integrate various approaches is the ‘She Conquers’ initiative, which aims to empower adolescent girls and young women to reduce HIV infections, tackle gender-based violence, keep girls in school and increase economic opportunities.

“It recognises how patriarchal attitudes, poverty, social pressures, unemployment and lack of adequate health and other services conspire to reduce the prospects of young women – and then involves these women in overcoming these challenges.

“This is one of the ways we are working to build a nation that is prepared to confront the many different ways in which women are subjugated, marginalised and overlooked – a nation that wages a daily struggle against patriarchy, discrimination and intolerance.”

While Ramaphosa’s words are comforting, as they acknowledge the difficult situations in which young women and girls live, as well as the patriarchal nature of our society, one is left to wonder why so little is known about this important initiative, and how it is working to tackle the multitude of obstacles mentioned.

What is DREAMS?

What are She Conquers and DREAMS exactly? What is happening on the ground to improve the lives of South African girls and young women? Are they reaching their intended audience and achieving their aims? And how can systems of power such as patriarchy, entrenched in society for centuries, be tackled by health-led programmes only in place for a few years?

DREAMS is a global partnership, announced in December 2014, between the United States President’s Emergency Plan for AIDS Relief (PEPFAR), the Bill & Melinda Gates Foundation, Girl Effect, Johnson & Johnson, Gilead Sciences and ViiV Healthcare, aimed at reducing new HIV infections in girls and adolescent women by 40 per cent by 2017. But the South African arm of the project started late, and the target has been shifted to 2019.

PEPFAR’s Caroline Schneider told Spotlight/Health-e that to achieve this, the “ultimate goal is to help girls develop into Determined, Resilient, Empowered, AIDS-free, Mentored and Safe women” – the tenets the DREAMS name stands for.

Backed by U$385 million [about R4.5 billion], the “ambitious” initiative aims to go “beyond the health sector” to address the social factors that drive young women and girls’ particular vulnerability to HIV, including GBV, poverty, school drop-out, and gender inequality in the form of “economic disadvantage” and “discriminatory cultural norms”.

It was launched in 10 sub-Saharan African countries, with South Africa being allocated U$66 million [about R770 million], when it began operating locally in 2016.

It operates in five districts: eThekwini, uMgungundlovu and uMkhanyakude in KwaZulu-Natal, and Johannesburg and Ekurhuleni in Gauteng, and is facilitated through 20 implementing partners.

What is She Conquers?

Also launched in 2016, She Conquers is a government campaign “aimed to reach adolescent girls and young women aged 15-24 in South Africa who have high rates of HIV as well as teen pregnancies”. Like DREAMS, it aims to do this by looking at the problems in society that make this group particularly vulnerable.

This is according to the DoH’s Dr Yogan Pillay, who said that more than R3 billion has been invested in the programme by three major donors: PEPFAR, the Global Fund to Fight AIDS, Tuberculosis and Malaria, and the German Development Bank (KFW).

He added that the campaign is being rolled out in three phases, with the first phase being implemented in the 22 districts with the highest HIV burden, “where the need is the greatest”. Based on what is learned in these areas, the interventions will be rolled out nationally.

The five targets to be achieved in the 22 priority districts for the three-year-long campaign are ambitious:

Decrease new HIV infections in this group by at least 30 per cent, from 90 000 per year to fewer than 60 000 per year;

Decrease teen pregnancies, in particular under-18 deliveries, by at least 30 per cent, from 73 000 to 50 000;

Increase retention of this group in schools by 20 per cent;

Decrease sexual violence and GBV in this group by 10 per cent;

Increase economic opportunities for young people, particularly young women, by increasing youth employment by 10 per cent.

It is unclear whether progress against these targets will be measured and reported in a way that allows the public and independent experts to hold these programmes accountable in a meaningful way.

There is also much confusion in the public domain as to what the campaign is, whether it is a communication and awareness initiative, or if it involves practical interventions; and if it is adequately responding to the needs of girls and young women: the people it aims to benefit.

The confusion extends to how these initiatives are linked.

Health minister Dr Aaron Motsoaledi told Spotlight that “She Conquers became the South African expression of how to implement DREAMS”.

Schneider said the $66 million South African DREAMS funding allocation falls under the She Conquers umbrella, but that the money is not directly funding the local campaign.

“DREAMS is contributing to achieving the objectives of She Conquers. The US PEPFAR programs in the DREAMS focus districts are in line with the She Conquers strategy, and support She Conquers initiatives in those districts. We can’t speak to the overall She Conquers budget, as this is a Government of South Africa initiative,” she said.

Pillay said She Conquers is a “combination of awareness and practical projects”. But many activists have questioned, firstly, if the campaign is adequately raising awareness in a nuanced way that speaks to the myriad societal ills preventing girls and women from staying safe; and secondly, whether the other interventions are reaching those affected.

Billboard controversy

She Conquers has been most visible in its communication campaign – particularly in the controversy surrounding two of the billboards it commissioned.

Social media erupted in September last year when a billboard next to the N1 in Johannesburg was erected with the tagline: ‘Who says girls don’t want to be on top?’ In smaller letters underneath it reads: “Complete your matric, study hard and graduate!”

While the DoH rejected claims that the message contained sexual innuendo and therefore failed to address the context of violence and lack of support in which girls are expected to ‘study hard and graduate’, many on social media felt the message to be insulting.

Sexual and Reproductive Justice Coalition founder Marion Stevens said that instead of trying to address the circumstances in which young women remain vulnerable, this kind of messaging only perpetuates the status quo: expecting girls themselves to rise above their trying circumstances, be resilient, and somehow succeed.

“With the black girl emoji attached to it and the sexual innuendo, it reinforces the harmful tropes of black women as hyper-sexualised, and places the burden on young black women to overcome obstacles that are out of their control. How can a young woman stay in school when she has to choose to buy food for herself and others in the household instead of paying school fees? Girls drop out because of a range of factors, such as food, security and transport,” she said.

In this type of messaging, Stevens said, there is no mention of the challenges affecting their ability to stay in school or protect themselves from HIV.

Nicknaming the campaign #HeDecides, Stevens questioned who is actually responsible for constructing the She Conquers messaging, because the voices of young women themselves have been left out.

Long-standing HIV activist Yvette Raphael was involved in the initial conceptualisation of the She Conquers campaign, and said that the initial “consultations went well”.

“It looked like it was going to be an overarching campaign that would support very successful campaigns on the ground already working with women. But that is not the reality now. I don’t even know what to make of it – it’s very confusing,” she said.

Young women left out?

While the campaign was initially conceived as being youth-led, Raphael said that young women have been left out of campaign decisions on more than one occasion.

“I don’t think enough engaging of the target audience is happening and that’s why we are getting messages that are insulting to young women. Girls want to be on top – which young person would say that, outside of a relationship? Which young person can own that tagline?”

Raphael said that young women were asked to vote on a campaign name, but that name was never used; instead, ‘She Conquers’ was chosen, without an explanation as to why the name chosen by the young women was ignored.

Motsoaledi said a young woman from Limpopo was responsible for the She Conquers name, and suggested it to the DoH through social media.

Raphael said the problem is that “old people are thinking they can think like young women”. “She Conquers can only serve its purpose if it’s led by young people, and comes from them.”

She Conquers has set up a youth advisory committee located within the South African National AIDS Council (SANAC), consisting of nine young woman representatives who were elected at a She Conquers bootcamp.

But members of this committee told Spotlight that they do not have much decision-making power.

The executive secretary for the committee, 23-year-old Koketso Rathumbu, said the committee was not involved in formulating the messaging for the communications campaign, including the controversial billboards.

“The DoH is the one who facilitates and decides on the communication plan; and unfortunately, this was not shared with us, and there no clear reasons as to why – we have made a request,” she said.

While Rathumbu had positive things to say about the campaign – for example, that it is getting people talking about these issues, and is reaching some young women with beneficial interventions – she said that it is failing in other areas.

“We are advocating for the visibility of the campaign, over and above the media campaigns and billboards. We are fighting for more engagement and inclusivity at grassroots level, but it has been a challenge; many people in rural areas, for example, are not being reached.”

She also said that if every stakeholder, including various government departments, were “synchronised”, then “She Conquers would be a success”.

“The biggest challenge we’ve had is getting different departments to play a role, not just Health – for example, the Department of Basic Education to go into schools with the She Conquers plan. What we need and don’t have is a synchronised system that integrates all stakeholders.”

This could be why She Conquers is so confusing to the public, and even to the people involved in it. Conceived of and led by the DoH, so far it has failed to adequately integrate all sectors.

Who is in charge?

The Medical Research Council’s Dr Fareed Abdullah (a former SANAC CEO) said that SANAC – as a body designed to facilitate multi-sectoral collaboration between various government departments, civil society and other stakeholders – should be responsible for the running of the She Conquers campaign. It should also be the seat responsible for the coordination of various partners working on HIV prevention in young women under the She Conquers banner, including the DREAMS partnership and others.

Pillay admitted that She Conquers is “supposed to be a programme that links various initiatives under one banner”, but that “coordination is not an easy thing to do”. While Ramaphosa was deputy president, he asked that SANAC take on this role – indirectly acknowledging that the DoH cannot fulfil the mandate on its own.

But the confusion around the programme continues. While Pillay said that handing over the running of She Conquers to SANAC had been done as early as last year, SANAC spokesperson Kanya Ndaki told Spotlight a different story.

“SANAC is not responsible for the overall running of the She Conquers campaign, but this is something we are working towards. We are hosting a summit on young women and girls in March, and will be bringing all the partners involved to reflect on what has worked, so that we can coordinate the response better,” she said.

Ndaki said that the She Conquers campaign has been led by the DoH, but “we want to change that. We want it to be a multi-sectoral response, and SANAC is best placed to provide that multi-sectoral coordination.”

She added that while locating the running of She Conquers has been discussed on various platforms, it has not been finalised; but it is expected to be at the March summit.

Moreover, according to Schneider, DREAMS and its funding “was intended to spark investment globally in adolescent girls and young women programming, with biomedical, structural, and behavioural interventions, using multi-sectoral approaches”.

But when asked if there has been any domestic investment in She Conquers on top of the international aid, Pillay said no – “just the money we have. We have already made it clear from the beginning, from government, the funding will be a reprioritisation of existing funding,” he said.

But Abdullah made the point that the programme – should any impact it makes be sustained – “cannot only be funded by donors, and the South African Government also needs to make significant investments in this programme”.

Will young women have access to PrEP?

Abdullah also said that “one of the key weaknesses of the programme is the very limited offering of pre-exposure prophylaxis (PrEP)”. PrEP consists of a daily dose of antiretroviral medication to prevent HIV infection, and has been shown to be highly effective if taken as indicated.

The World Health Organisation recommends PrEP for young women in areas where the rate of new HIV infections is high; but according to Abdullah, even though this is “one of the most effective interventions” in existence for HIV prevention, “South Africa has limited PrEP to a few pilot sites”.

This is despite the fact that the latest National Strategic Plan (NSP) for HIV, tuberculosis and sexually transmitted infections makes provision for the implementation of PrEP for populations at a high risk of acquiring HIV.

Abdullah has been critical of the NSP, saying it limits PrEP access. The Plan’s targets are that between 2018 and 2022, there should be just over 104 000 new PrEP users. PrEP will be offered to young women, female sex workers, men who have sex with men, and people who inject drugs.

According to Pillay, through She Conquers, PrEP is slowly being rolled out: it was made available to young women at nine university campuses in October 2017. Only 26 people were initiated on PrEP during the first month; after that, the programme was stalled, because universities were closing for the end-of-year holidays. Those who had started PrEP were given a supply for the holidays.

Since February, two more university campus clinics have begun offering PrEP, bringing the total to 11; but the DoH does not have data on new uptake at these sites for 2018.

Pillay said: “During the next six months, PrEP will be made available at some 20 primary healthcare clinics in the 22 She Conquers priority sub-districts.”

The aim is to offer PrEP to between 5 000 and 8 000 young women over the next year.

There are multiple programmes running under the She Conquers banner that are doing important and effective work. But the success of any HIV-prevention campaign that seeks to solve systemic issues in society such as violence and gender inequality will rely on the successful integration of every actor on every level.

To truly help young women and girls in South Africa, programmes will need to put them and their views, voices and suggestions at the epicentre of decision-making. ‘She’ can only ‘conquer’ when ‘she’ is actively engaged and listened to.

In this context, it is important to remember Ramaphosa’s final words on the epidemic of GBV in South Africa during his SONA response:

“It is a social issue that must engage, involve and mobilise the whole of society.We must be prepared, as government, to acknowledge where we have failed our people. Where we have made mistakes, we will correct them.”

Luckyboy Mkhondwana, National Training Co-ordinator at the Treatment Action Campaign

The plan, which was launched under the banner of the South African National AIDS Council, seeks to address some of the many issues affecting the various communities that are part of the LGBTQIA+ community, with all their varied and unique needs. However, nine months have passed, and still there has been no meaningful attempt to implement the plan.

Luckyboy Mkhondwana is the National Training Co-ordinator at the Treatment Action Campaign, and a long-time campaigner and advocate for the rights of the LGBTQIA+ community. He took Spotlight through the gaps that exist in the policy and its implementation.

Do you think that the Sexual and Reproductive Health Rights (SRHR) needs of queer folk are addressed in the public health sector?

No, there are a lot of gaps that need to be addressed. For instance, if a lesbian woman misses her period and goes to a public clinic to find out about the possible cause of the delay, she will be asked about the last time she had sex, and a pregnancy test would be done on her. This is unfair, and disrespectful to her sexual orientation.

Moreover, the judgement received by gay men when they go to public health clinics for screening and treatment of sexually transmitted diseases (STIs) discourages them from going back to the clinic when sick. For instance, if a gay man has warts on the anus, it is not easy to seek medical help, because some healthcare providers will judge him – especially since they are used to seeing warts on the genitals, not on the anus. This has led to many gay men living with untreated STIs. The only clinics that are sensitised to offer non-judgmental health services are the facilities that work with organisations such as the Anova Health Institute; which are not accessible to all gay men, due to where they are located.

Would you say the LGBTQIA+ HIV Plan 2017-2022 addresses the needs of queer folk?

I think the plan is a good document, full of promise – but there is no implementation. It has been nine months, but we have not seen anything on the ground. I am curious to know what they will report on, when it is time for review.

What should be the specific SRHR priorities for queer folk?

The LGBTQIA+I HIV Plan seeks to offer a core package of health services, and it includes confidentiality. However, that is not practised on the ground. If a trans woman visits a clinic, the healthcare providers usually call their peers to stare at the trans woman. They look at her as if she is in a circus, because she is wearing female clothes. There is a good chance that the nurse assisting the trans woman would disclose to his or her colleagues the reason for her visit.

The plan further suggests that the LGBTQIA+ community should have access to HIV-prevention tools; whereas in reality, only a few have access to tools such as Pre-Exposure Prophylaxis (PrEP). If one lives far from the Anova Health Institute centres, one cannot access such services.

There are no lubricants for the trans women and men who have sex with men (MSM) communities. These should be freely available in public health facilities, just as male condoms are easily accessible. A 500ml bottle of lubricant costs R85 or more in a pharmacy, and not all can afford to buy it.

One of the goals of the plan is to reduce HIV prevalence and incidence rates. It continues to highlight the importance of increased access to HIV prevention tools. However, it is very difficult to gain access to dental dams, finger cots and PrEP in the public sector, to protect against new HIV infections.

A dental dam, like a condom, is a barrier method. It is a thin, square piece of rubber which is placed over the labia or anus during oral-vaginal or oral-anal intercourse. Dental dams are most often made of thin latex rubber; however, for those allergic to latex, they are also available in silicone.

A finger cot is a ‘glove’ that covers only one finger. It is basically a ‘finger condom’. Finger cots are often recommended as a safer sex device for fingering.

Access to Human Papilloma Virus and screening is difficult for some lesbian women and trans men who have not gone for gender reassignment. When they go for a Pap smear test, they are asked why they require such services, because they are men. Healthcare providers judge them based on how they look. You may find that some had previously engaged in sexual intercourse with heterosexual men, meaning they too are at risk of contracting the two diseases.

In general, all service providers must be sensitised and taught how to address queer folk. The assumption that we are all either women or men is offensive. Gender non-binary groups are usually the victims of that offense.

An investment in mental health is key to the provision of SRHR, because the two are linked. There is a great demand for psychosocial support among queer folk, since they endure much discrimination at home, in their workplaces, and in their societies in general. A number of them engage in reckless behaviour, including substance abuse and casual sex, to numb the pain. This kind of behaviour poses a threat to their health, since it exposes them to the risk of HIV infection.

Lastly, the plan stresses the importance of recruiting LGBTQIA+ communities through peer educators. However, no recruitment has happened on the ground. Even when it comes to HIV testing, only the non-profit organisations visit LGBTQIA+ spaces to offer the services to them.

Can we say that all queer folk would have similar SRHR needs?

No, [the solutions to] our needs need to be tailor-made to suit each individual. Not every woman wants contraception; queer women need dental dams or finger cots, whereas a trans woman may need a lubricant. Also, the SRHR needs of one trans woman could differ from those of another trans woman, just as heterosexual women may have different preferred contraceptives.

What are the biggest challenges for queer folk trying to access health care in clinics and hospitals?

Stigma and discrimination prevent a lot of people from accessing healthcare services. This is the major barrier for queer folk.

What would you change tomorrow if you had the power, in terms of SRHR for queer folk?

I would ensure that the individual SRHR needs of queer folk are prioritised – I wouldn’t assume that a one-size-fits-all approach will work. I would ensure that healthcare providers are properly sensitised, and that I would be able to go to a clinic and get everything that I need, without fear of being judged.

What is TAC doing to address the SRHR needs of queer folk?

We have an LGBTQIA+ sector in seven provinces. We have been struggling to get funding for LGBTQIA+ advocacy work; however, we have incorporated LGBTQIA+ work in most of our work and campaigns, including treatment literacy programmes. Funders prefer funding service-provider organisations, because they can quantify how many queer folk they have reached, recruited and assisted; whereas advocacy is hard to quantify.

township, it is at the forefront of trying to find answers to the tough questions regarding young people and access to healthcare services. The foundation is specifically interested in innovative HIV research, and even more so where it intersects with young people’s issues. Simply, they want to find innovative health-delivery mechanisms that keep young people healthy, HIV-free, and without the burden of teenage pregnancy and similar challenges.

The adolescent girls and young women division focuses on sexual and reproductive health rights, mental health, HIV, life skills, and sero-neutral service delivery. ‘Sero-neutral services’ means that everyone is treated the same, irrespective of their HIV status.

The DTHF’s director, Professor Linda-Gail Bekker, has been at the helm for over 10 years, and has led a team trying to figure out how young adolescents can be ethically involved in HIV prevention research. This is because the laws against HIV research on adolescents are very tough, prompted by the assumption that because adolescents are below the age of consent, they are therefore vulnerable. However, the DTHF has made great strides in fighting for adolescents to be included in HIV research trials.

The DTHF has been involved in adolescent PrEP studies, including PlusPills, the 3P project, and the ADAPT study. The Foundation has also conducted HIV vaccine studies (SASHA) and HIV self-testing studies. “Our current range of research (treatment, prevention, socio-behavioural, structural) is vast, but we are always looking to explore and expand the evidence base around what works for adolescents. Permission to conduct research is sought through our ethics committee, and is – rightly – a strict process. We take great measures to adhere to ethical guidelines around adolescent research, and work with our ethics committee and youth advisory board to make sure we go about this in the best way. To best serve adolescents and meet their needs, we need to know what works; so this research is important to do,” says Bekker.

Responding to a question regarding the emphasis on young women, Bekker says: “Young people, particularly young women and girls, are disproportionately affected by the HIV epidemic, and are at high risk for infection. Young people are also undergoing a unique phase of life, characterised by biological and physiological changes, increased risk-taking behaviour, etc.; and so it is important to have services and strategies that are specifically tailored to them.

“The foundation employs a harm-reduction approach, as opposed to a ‘prevent sex from happening’ strategy,” Bekker explains from her office on UCT’s medical campus. In 2005, the foundation conducted a survey at Masiphumelele township in Cape Town’s southern suburbs, and found that many young women they spoke to were already infected with HIV. One of the outcomes of their survey was information that a contributing factor to the high HIV incidence rates was that young women had no-one to talk to about sex.

The DTHF is now running a number of youth programmes at youth centres, such as the Philippi Village and Hannan Crusaid Youth Clinics (in Philippi and Gugulethu respectively); the Masiphumelele Youth Centre; and the Tutu Teen Truck (mobile service). These include the Health Zone (where young people learn about sexual and reproductive health rights, for example), an Edu Zone (where learners are assisted with school homework), a Fun Zone (where young people participate in sports), the Women of Worth study (see article on page 29), and 18-month internships – offered to youth who have graduated from the Zimele programme, and no longer fit the targeted age category of 10-24 years; these interns run the Zones.

The DTHF delivers youth-friendly sexual and reproductive health services through various platforms, including the Tutu Teen Truck (a mobile clinic delivering health services to young people) and youth-friendly clinics (mobile health facilities providing services that are targeted at and designed for young people). About 4 000 young women use the youth centres, and 300 of those are on Pre-Exposure Prophylaxis (PrEP). This form of PrEP is an antiretroviral drug called TRUVADA, taken daily by HIV-negative people to prevent HIV acquisition.

Innovative reward system

The programme uses some innovative systems to keep track of the young people. Every young person who is part of the youth programme has a unique identifier, logging in using a fingerprint on the biometric machine at the entrance, at which point their medical file is uploaded on the healthcare provider’s computer.

To encourage young people to stay healthy and HIV-free, the foundation has a reward system for all its young members through which they earn points for doing all the vital tests. Undergoing an HIV test gets you double points. This initiative is also aimed at normalising HIV among young people. The ‘currency’ used for the points system is the ‘Tutu’ – three Tutus are equivalent to R1. These can be exchanged for food vouchers. An HIV test is rewarded with 100 Tutus. According to Bekker, “You’ll find a 19-year-old boy asking his friends if they have done an HIV test yet, because he is short of Tutus.” The youth use Tutus to buy a number of items from a local mall or an onsite café.

If someone has a negative test result, they are reminded about the importance of staying HIV-negative, and encouraged to use available HIV-prevention tools. A person who tests positive will receive the same number of Tutu rewards. “We do not penalise mistakes, because that doesn’t work well,” says Bekker. This means that young people get rewards regardless of their HIV status; however, they receive different packages of care. For instance, a person who tests positive would be offered counselling, encouraged to go onto treatment, and advised to encourage their partners to be tested as well.

The Tutu reward system is also aimed at preparing the youth for the grown-up world, and teaching the importance of saving. This is part of positive youth development. The foundation offers 18-month internships to youth who have graduated from the programme, from age 24. The internships involve running the three Zones for younger people, and teaching life skills. There are two interns for each Zone. Most young people relate better to their peers. “What I’m really passionate about doing for this country is to develop a cadre of community healthcare workers who are adolescents,” says Bekker.

The Tutu Teen Truck

According to Bekker, the Youth Centre has been criticised for its perceived inability to be scaled up, as it would not be possible for the government to replicate the same programmes for the entire country. But there are some important elements of the programme that the government could apply, and which are cost effective. The Tutu Teen Truck is one of them. It takes the elements of the sexual and reproductive health services and puts them in a funky-looking truck, which is an “adult-free and adolescent-aware environment”. It is brightly painted, and designed to be attractive to young people. The staff are properly sensitised and trained to be adolescent-friendly.

A range of services is offered to 12- to 24-year-olds. Bekker is trying to get the government to approve the provision of antiretroviral therapy (ART) through the Truck, so that young people – whatever their test results – can get appropriate care and support as part of a combination prevention strategy, without delay.

The Truck travels around Mitchells Plain, Klipfontein and Mfuleni townships, and stops in areas with high HIV prevalence. It draws the attention of young people by playing loud music. It operates every Monday to Friday from 12pm to 6pm, as well as some Saturdays. It offers a range of contraceptives and sexually-transmitted illness (STI) screening interventions, through the use of a GeneXpert machine installed in the truck – a machine mainly used to detect TB, via sputum samples, but which can also be used to test for various other diseases.

A person’s sample is inserted into the GeneXpert, which then conducts an antigen test. “A large number of young people are walking around with untreated gonorrhoea and chlamydia that we are missing, so this offers same-time STI detection and treatment,” says Bekker. The truck also offers tuberculosis (TB) screening to young people suspected of having the infection. Those who require abortion services are referred to health facilities in their neighbourhood that offer such services. “A lot of the young people who use these services just need to talk to someone who will not judge them in any way,” Bekker adds.

To explore the cost-effectiveness of providing effective youth-friendly services to young people, the same elements of the youth centre and the Tutu Teen Truck are being piloted in some public health facilities. The Global Fund to Fight AIDS, Tuberculosis and Malaria has funded a three-year programme aimed at 22 000 young women and adolescent girls between the ages of 10 and 24 years, in the Klipfontein and Mitchells Plain areas. Alongside the DTHF youth centres, the foundation has identified 24 public health facilities in the Mitchells Plain and Klipfontein health sub-district where they could render the same youth-friendly services to young women and girls. In all of these facilities, they are guided by the National Adolescent and Youth Policy 2017.

Part of the Global Fund grant is used to pay peer navigators at government clinics. A peer navigator is a young person who welcomes young people at the clinic as they arrive at the door, and directs them to the relevant staff. Each clinic also has an adolescent-youth-friendly service champion who has been identified at the clinic. This could be anyone at the clinic: a nurse, a security guard or an administrator, for example. The role of the champion is to ensure that youth-friendly services are rendered to young people without prejudice.

The Foundation is currently developing what is called an ‘adolescent pack’, which outlines how nurses should treat adolescents in clinics. This was prompted by the fact that traditionally, nurses only operate using ‘adult’ and ‘child’ packs; they do not know how to address adolescent health issues, which are largely sexual- and reproductive-health-related. Every clinic staff member – including the security guards, nurses and cleaners – is trained in how to render youth-friendly services.

On top of these programmes, the Foundation has approached all the high schools in the sub-districts to find out from the headmasters what kind of services they would allow to be provided in their schools. Some choose contraception only; others want the comprehensive sexual- and reproductive-health package. Again through the Global Fund grant, the foundation has hired four nurses who visit all the schools that require these services. Some schools only allow counselling to be offered to learners, and nothing else.

Keeping girls in school

The DTHF has another initiative, called the Keeping Girls in School programme, which targets 15- to 19-year-old girls, with the aim of keeping them in school. Young women and girls are taught about their reproductive organs, and the importance of HIV and pregnancy prevention. This initiative is run by peer educators in schools; through the initiative, the foundation supplies sanitary pads and tampons to female learners.

The DTHF is also conducting a study called Women of Worth, targeting 19- to 24-year-old girls out of school. The study aims to enrol 10 000 young women in order to equip them with self-empowerment skills, in 12 sessions. These sessions cover a variety of issues, such as gender-based violence, sexual and reproductive health, and how to prepare for the job market; a type of life-skills training.

Of the 10 000 young women, 5 000 will receive a cash incentive as part of the study. This research aims to establish whether a cash incentive could help improve health outcomes. The sessions offered include topics such as self-empowerment, sex talks dealing with HIV, STIs and family planning, gender-based violence, personal finance management, and so on.

The study will assess how well these programmes work. Half of the participants will be randomly selected to receive a cash incentive and the empowerment course, whereas the other half will only receive the empowerment course. The study will establish whether these young women’s health outcomes are significantly improved by them attending empowerment sessions and receiving a cash incentive. The cash incentive is an example of behavioural economics, based on the assumption that a lot of young women get into difficult relationships because they want cash. The cash transfer is dependent on their involvement in the study. After completing the 12 sessions, the young women will graduate, and some will be enrolled in the learnership programme in the DTHF – provided they finish and excel during the two-year period of the programme. The majority of the young women in the study already have a child, and come from very poor backgrounds.

“Unless we try to address the socio-economic challenges that young women face on a daily basis, through equipping them with income-generation skills, we can offer as many contraceptives and HIV-prevention tools as we want; but we will not see any progress,” says Bekker. The young women who have completed the programme are encouraged to recruit their peers to enrol as well.

There is a parallel programme targeting young men, in which participants discuss men’s issues and how to treat women. The sessions are a ‘woman no-go zone’. Both the Women of Worth programme and the men’s health component include a session on LGBTI needs and issues. Every young person has a tailor-made programme meant to address issues specifically related to them.

“If all these programmes do not work in three years, I will know that we had a fair try,” says Bekker.

Note: This is the editorial from a special print edition of Spotlight guest-edited by young people.

Every week in South Africa, around two thousand young women and girls

Thuthukile Mbatha, guest editor on this special youth edition of Spotlight

between the ages of 15 and 24 become HIV positive. More than one in ten women and girls in this age group are living with HIV.

On the back of these shocking statistics, many targeted programmes have

been launched in South Africa. Whether these programmes are what is needed, and whether the state is fulfilling its duties to young women and girls, are key questions we discuss in this youth-focused and youth-edited issue of Spotlight.

On paper, the rights of women and girls in South Africa – or that subset of rights we call sexual and reproductive health and rights (SRHR) – are relatively well protected. The Constitution enshrines the right to bodily integrity, the right to access healthcare services, the right to education, the right to dignity, and the right not to be discriminated against.

Specific laws such as the Sexual Offences Act and the Choice on Termination of Pregnancy Act provide specific protections and affirm specific rights. Policies such as the Department of Basic Education National Policy on HIV, STIs and TB, and strategies such as the National Strategic Plan on HIV, TB and STIs 2017-2022 further guide the implementation of state programmes aimed at the realisation of these rights.

And yet, despite this generally enabling legal framework, the reality in South Africa is that most young women – and young men, for that matter – grow up poor, and with limited education. Only around 40% of young people matriculate by age 20. Around two thirds of youth 25 and younger are unemployed (under the expanded definition that includes people who have stopped looking for work).

Most girls grow up in highly patriarchal communities, often communities with high rates of gender-based violence. The criminal justice system is often unresponsive and downright dysfunctional when it comes to prosecuting gender-based violence.

Doctors without Borders (MSF) estimates that one in four women in the Rustenburg area has been raped at least once in their lives, and that the vast majority of them did not tell a healthcare worker about the rape. Reliable national figures are hard to find, but it seems many rapes are not reported; and even when they are, dockets often go missing, or police bungle the investigation.

The 2014 Khayelitsha Commission of Inquiry, led by Advocate Vusi Pikoli and Judge Kate O’Regan, grew out of frustration with exactly this kind of dysfunction. Despite the excellent work of the commission and its impressive report, four years later the criminal justice system remains severely dysfunctional in areas where mainly poor people live.

It is within this dire socio-economic context that we should consider that many women and girls struggle to access the tools that may protect them against unwanted pregnancy and HIV infection. Making condoms and other contraceptives easily available to learners remains taboo in many schools.

Youth-friendly healthcare services remain the exception to the rule. While we know that young women at high risk of becoming HIV positive can benefit from oral pre-exposure prophylaxis (PrEP), the rollout of PrEP to young women has been stalled by a lack of political will, and an overly cautious public-health approach that pays scant regard to the rights of young women.

It is not surprising that in such socio-economic conditions, and with such

Teenage girls on their way to school in Soweto, Gauteng. The best time to teach young people about sexualand reproductive health is when they are at school. (Image: Rosa Irene Betancourt, Alamy)

limited access to available prevention methods, as many as six per cent of girls aged 15 to 19 fall pregnant every year – according to one report, that amounted to around 15 000 pregnancies among girls in school in 2015. The two thousand new HIV infections in girls aged 15 to 24 every week are also not all that surprising, given the context sketched above.

Though the personal cost to young women is clearly very high, there is surely also a high societal cost. While most women living with HIV can live perfectly normal lives thanks to antiretroviral therapy, the infection does still require lifelong treatment and care – which come at significant cost, either to the state or to individuals. The minority of women who develop serious secondary infections such as tuberculosis or crypto will face additional costs. Possibly even more disruptive to a young woman’s prospects is an unwanted pregnancy – something that could mean an end to one’s formal education, or which could make it harder to hold down a job.

Together, unwanted pregnancies and HIV infection constitute a kind of poverty trap: poor people are more likely to experience unwanted pregnancies and to contract HIV, and this then makes them and their children more likely to be poor in future. The struggle for SRHR is not a struggle for some abstract ideal, but a struggle to help women break out of this cycle of poverty and disease.

Faced with such a complex set of socio-economic factors, one should be sceptical of supposed quick fixes for the dual problems of HIV and unwanted pregnancy. For example, while anti-sugar daddy campaigns might provide convenient scapegoats, there are real questions as to whether such campaigns will make any difference without addressing the underlying social and economic realities.

Fortunately, however, we do have programmes that are approaching these complex issues with seriousness, and a more sophisticated understanding of the complexities involved. Perhaps foremost among youth-focused interventions is the innovative work done by the Desmond Tutu Foundation in and around Cape Town – see our article on page 35 about their youth-friendly clinics, the Tutu truck, and their trial of conditional cash transfers.

Confirming what works in programmes such as that of the Desmond Tutu Foundation and then scaling that up, as well as addressing the ongoing crisis of South Africa’s dysfunctional education system, must be a national priority in the coming years. In his response to replies to the State of the Nation Address in February, new South African President Cyril Ramaphosa said that “we must confront the social and economic factors that prevent young women from completing school, entering higher education and graduating”, and that “we must all work together to tackle the chauvinism experienced by women in the workplace and other social settings”.

The president identified the She Conquers campaign as government’s key programme in this regard (see our article on DREAMS and She Conquers on page 22). While such big programmes are welcome, as are the donor dollars that often fund them, there are questions to be asked as to whether these programmes really meet the needs of young women.

But along with these longer-term and overarching solutions, there are things that can be done right now – such as ensuring that condoms are freely available at all schools, and dramatically expanding access to PrEP. Whether these interventions will be implemented is mainly a question of political will. And whether the political will is there to follow through on President Ramaphosa’s welcome words on the role of women in our society remains an open question.

Ultimately, we can measure the state and President Ramaphosa’s response to the dual crises of HIV and unwanted pregnancy by the answers to a few simple questions:

Do all young women and girls in South Africa have easy access to comprehensive sex education?

Do all young women and girls in South Africa have easy access to condoms and other forms of contraception?

Do all young women and girls in South Africa have easy access to professional termination of pregnancy services?

Do all young women and girls in South Africa at significant risk of contracting HIV have easy access to pre-exposure prophylaxis (PrEP)?

Do all young women and girls in South Africa have access to high-quality secondary and tertiary education?

Do all young women and girls in South Africa have safe and easy access to appropriate police and medical services in cases of rape or other forms of sexual violence?

At present, the state is failing abysmally at most of these measures. Look at the lives of young women in Khayelitsha, in Rustenburg, in Lusikisiki, in Ermelo. It is there in our dilapidated schools and in our dangerous and poorly-lit streets, for all to see.

While this remains the case, all the positive rhetoric and advertising campaigns about empowering young women will ring hollow. The large-scale infringement of the sexual and reproductive rights of young women and girls in South Africa will continue; and the poverty trap fuelled by HIV and unwanted pregnancy will ride roughshod over our futures.

Thuthukile Mbatha has been a researcher at SECTION27 since 8 January 2014.

The Health Systems Trust last week published the latest edition of the District Health Barometer (DHB). The DHB provides a wealth of district, provincial and national level data on a wide variety of indicators. Below we have picked out eight interesting national-level findings. You can access the DHB 2016/2017 report and an associated data file by clicking here.

1. In 2016 only an estimated 72.8% of people in South Africa with diagnosed TB were started on TB treatment. The rate was slightly lower at 68% for people with TB resistant to rifampicin (one of the standard first line medicines to treat TB). The fact that around 27% of people with diagnosed TB do not start treatment timeously puts the health of these people at risk and makes it more likely that they will transmit TB in their communities.

2. According to current treatment guidelines almost all patients with both HIV and TB should be receiving antiretroviral therapy (ART). According to the DHB only 28% of people in this group received ART in 2011 (partly due to different treatment guidelines at the time). This number climbed rapidly to 90.8% in 2015 and then dropped to 88.3% in 2016. We do not know whether this drop from 2015 to 2016 is real or whether it is due to a statistical or reporting error.

3. According to the DHB the annual death rate for people with drug-resistant TB (DR-TB) is around 23%. The rate of loss to follow up is around 17% and only around 50.5% of people with DR-TB are successfully treated.

4.There has been a steady rise in the number of male condoms distributed in recent years – growing from 15.7 per male over 15 in 2011 to 47.5 in 2016.

5. The percentage of total life years lost due to non-communicable diseases (NCDs) in South Africa has risen over the last four years from 34.5% to 38.2%. This provides further evidence of the growing threat of NCDs to people living in South Africa and to the country’s healthcare system and economy.

6.In 2016/2017 only 82.3% of infants received all the required immunisations in the first year of life. This was a substantial drop from the previous two years – something the report ascribes to both vaccine shortages and poor distribution.

“During 2016/17, immunisation coverage nationally was 82.3%, almost 10 percentage points lower than the national target of 92.0%. This was a 6.9 percentage point reduction from the immunisation coverage of 89.2% reported in 2015/16 and lowest during the last five years. Between 2012/13 and 2014/15 there has been a general upward trend, with immunisation coverage increasing from 83.6% in 2012/13 to 89.8% in 2014/15. The rate then declined slightly between 2014/15 and 2015/16 but showed a huge drop in 2016/17. The main reasons that contributed to this decline were: the global shortage of Hexavalent that lasted approximately nine months and was resolved at a national level in October 2016; in some provinces and/or districts the available stock was distributed equally to different areas without considering the demands and population targets, thus painting an extremely heterogeneous picture of coverage.” – DHB

7.In 2016 there was 18 119 stillbirths in South Africa. While there is a downward trend over the last three years, the DHB also reports a downward trend in live births – which suggests that the decrease in still births is at least in part due to a reduction in the overall birth rate.

8. According to the DHB the period from 2014/2015 to 2016/2017 has seen steady reductions in the following three child-health-related indicators: Diarrhoea deaths under five years (1 514 to 886), pneumonia deaths under five years (1 411 to 1 003), and severe acute malnutrition death under five years (1 851 to 1 188). While the trend is encouraging, it is nevertheless unacceptable that over a thousand children in South Africa died of severe acute malnutrition in 2016/2017.

1 October is set to become a memorable day in some higher-education institutions. It marks the day in 2017 that Pre-Exposure Prophylaxis (PrEP) was first rolled out at select campus health clinics as a new, highly effective HIV-prevention method. PrEP is an ARV drug combination taken to prevent infection by HIV-negative people who are at a greater risk of acquiring HIV. The two drugs in the only registered PrEP pill in South Africa are tenofovir and emptricitabine – also known under the brandname Truvada.

The provision of PrEP in South Africa occurs through various sites, these include the national health system, demonstration projects, large scale implementation initiatives (i.e. Dreams project) and the private sector. The Department of Health (NDoH) has identified seven higher education institutions that will form part of the above sites in rolling out PrEP to young people.

These institutions are the University of Free State, the University of Venda, Rhodes University, Nelson Mandela University, the University of Zululand, the University of Limpopo and Vaal University. Not all of them began rolling out PrEP on the set date; however, all these institutions were selected because they met the criteria set by the National Department of Health to assess their state of readiness to provide primary healthcare services to students.

A number of factors must be considered when determining whether an institution is fit for PrEP roll-out. These include staffing, qualification of nurses, dispensing licences and adequate storage, to name a few. The seven institutions currently providing PrEP are already dispensing antiretroviral treatment (ART) to students living with HIV, as well as other primary healthcare services, which was another prerequisite for PrEP provision. Many institutions do not offer this service for the reasons listed above, among others.

It is important for professional nurses to have a primary healthcare qualification, and also to acquire a dispensing licence. This enables them to deliver primary healthcare services, including ART and PrEP initiation. The provision of such services is usually supported by the District Department of Health office. Only the institutions that pass the assessment are considered as PrEP roll-out sites. In the institutions listed above, extensive training of clinic health personnel and peer educators was done to ensure readiness for PrEP provision and demand creation in these institutions. However, students have not yet been properly engaged, as the roll-out was introduced at what was a very busy time for students, who were preparing for exams. These institutions aim to intensify their demand-creation campaigns in the new year.

Most institutions fund the operation of their own campus health clinics; however, the Department of Health supplies them with family-planning and STI medicines. “We had to sign a memorandum of understanding with the Department of Health in order for them to supply us with PrEP,” said a health professional at one of the institutions.

“We do not have a set target number of students to provide PrEP to – every student who comes to our clinic and requests it is given it, after doing an HIV test and establishing that the student is HIV-negative,” she added.

The seven higher-education institutions that have started rolling out PrEP are an addition to the 17 demonstration sites providing PrEP that were established from June 2016. These demonstration sites include clinics for sex workers and for men who have sex with men (MSM). South Africa’s approach to PrEP roll out is focusing on targeting these ‘key population’ groups. For groups of people considered to be key populations, see www.avert.org/professionals/hiv-social-issues/key-affected-populations

Truvada (or any other tenofovir-based regimen) as PrEP is still not included in the South African Essential Drugs List (EDL). Its inclusion in the EDL would bring down the costs of PrEP, which would make it cheaper for the National Department of Health to provide sustainably to people who need it.

It is also important to note that the state of readiness for PrEP varies from institution to institution. Institutions such as the Technical and Vocational Education Training (TVET) colleges do not have campus health clinics, therefore they rely on off-campus clinics for sexual and reproductive healthcare services. The future roll-out plans should also consider such cases. A proper audit of all campus and off-campus clinics is required, so that all the issues may be addressed before the scale-up of PrEP roll-out.

Moreover, for PrEP roll-out to be effective, the inclusion of Student Representative Councils is very important, because of the power of influence they possess. It is critical to have student involvement in the entire process, to ensure a more positive uptake.

Young women between the ages of 15 and 24 years are among the key population groups with the highest risk of contracting HIV. It is estimated that about 2 000 HIV infections occur weekly in South Africa among this group. A number of HIV-prevention campaigns have been targeting the youth out of school. Young women between the ages of 15 and 24 years in higher education institutions are usually the last ones to find out about such initiatives. The assumption that young women in higher education institutions are more knowledgeable about HIV prevention – and therefore more responsible – is false. They are as vulnerable as the young women out of school.

South Africa has a number of HIV-prevention interventions that were introduced to try and curb the increasing number of HIV infections in the country. These include female and male condoms, medical male circumcision, treatment as prevention, Post-Exposure Prophylaxis (PEP), and recently, Pre-Exposure Prophylaxis (PrEP).

PrEP is not yet widely accessible in the public sector South Africa. It can only be accessed through demonstration sites, clinical research institutes, and the private sector. A month’s supply of a daily dose of PrEP costs between R300 and R550 from the private sector. However, not all medical aids will cover the costs.

PrEP is only given to HIV-negative people who self-identify as being at substantial risk of acquiring HIV. The demonstration sites have seen a very low uptake of PrEP by the key population groups. This has raised concerns about providing it to young women, as they too may have a hard time adhering to the dosage regime; in other words, they may not take it as prescribed.

Any introduction of a new prevention product or intervention meets a lot of scepticism from the targeted population to begin with. Many clinical trials have been done that have shown that a lot of interventions work; however, they all experience a low uptake at first. The female condom, for instance, has been around for several years, but has been under-used. There have been many campaigns and initiatives highlighting the importance of medical male circumcision, shown to decrease the chances of contracting HIV among men by 60 per cent; however, we are still seeing only a relatively slow increase in the number of young men being circumcised.

What have we learnt from past experiences? Are we still employing the same strategies that we applied in previous interventions? The US is one of the first countries to roll out PrEP; they also saw a low uptake at first, but it has been improving gradually.

The scepticism seen is fuelled by the failure of PrEP in some clinical trials, such as those for FEM PrEP and VOICE – both of which involved women. These studies were testing the effectiveness of oral PrEP among women at higher risk of contracting HIV. They had to be stopped early when it became clear that the studies would not be able to show whether or not the pill prevented HIV acquisition (due to low treatment adherence in the trials).

However, the main reason for this was found to be low adherence. The women in these two studies were not taking the PrEP as prescribed. This conclusion was supported by evidence of very low drug levels in their systems; another reason is that they did not perceive themselves as being at greater risk of contracting HIV. According to the World Health Organisation (WHO), a person must take the PrEP pill daily for at least seven consecutive days before they are fully protected, and then continue taking it daily.

However, subsequent trials showed that in fact, PrEP does reduce risk in women. The Partners demonstration project was done using serodiscordant heterosexual couples as subjects, and proved effective. These are couples in which one partner is HIV-positive and on treatment, and the other is HIV-negative.

Some people are concerned that providing PrEP to young women will lead to promiscuity. However, there is no evidence of this among those taking PrEP. Furthermore, PrEP itself reduces the risk of HIV very effectively, so sex on PrEP should not be seen as ‘unprotected’. Sex on PrEP is ‘barrier-free’, perhaps, but certainly not unprotected or unsafe.

There’s a need here for a paradigm shift when discussing what is and isn’t ‘safer’ sex. Unlike condoms, which protect the user from pregnancy, STIs and HIV infection, PrEP only protects against contracting HIV. Someone taking PrEP would still need to use a condom or some other form of contraception as part of a combination prevention method.

As women, we value choice. For example, the decision to use Depo-Provera over an Intra-Uterine Device (IUD) as a family planning method lies solely with the individual. Young women in higher education institutions are no exception. They too need to be afforded the opportunity to choose which HIV-prevention option is best for them.

Studies have confirmed that PrEP works if you take it. So why are we not rolling it out to all young women at substantial risk of acquiring HIV? The alarming pregnancy rates in higher education institutions indicates low use of condoms and other family planning methods.

Providing PrEP to only a select group of people is not getting us anywhere. The country continues to see rising HIV infections among young women aged between 15 and 24 years. How many more infections do we have to see before we scale it up? Let’s equip young women with access to the best HIV prevention, and with the knowledge that will enable them to make informed decisions. The inclusion of PrEP into a comprehensive sexual and reproductive health package is the first step. PrEP campaigns should go hand in hand with campaigns to promote HIV testing and other available HIV-prevention tools.

Professor Quarraisha Abdool

One in five people with HIV – or who have newly acquired HIV – lives in South Africa, despite it being home to less than 1% of the global population. The use of phylogenetics to understand the infection of HIV highlights that about 24% of young women under 25 years of age do not know their HIV status; and about 60% are acquiring HIV from male partners who are on average eight or more years older than them, i.e. in the 25 to 40 age group. The majority of men of 25 to 40 years old are unaware of their HIV status and have high viral loads, suggesting recently acquired infection and hence higher transmission rates.

Young men are acquiring HIV from already infected women 25 to 35 years of age; on average, the age difference in these cases is about a year. About 40% of men 25 to 40 years old are having sex with women younger than 25 and women older than 25 concurrently, thus perpetuating these cycles of transmission. Preventing HIV infection in young women under 25 years will require a multi-pronged approach that includes Sexual and Reproductive Health Rights services to young women; finding the missing men (who do not access health services); and treatment of women older than 25.

Preventing HIV infection in adolescent girls and young women could change the course of the epidemic in Africa, and reverse the current poor global progress in HIV prevention. Oral tenofovir, alone or in combination with emtricitabine (PrEP), is the only woman-initiated prevention technology that does not require partner knowledge or co-operation. We cannot afford not to make this prevention option available to young women.

What is PrEP?

PrEP – in full, Pre-Exposure Prophylaxis – is ARV drugs taken by HIV-negative people to protect themselves from getting HIV. The only drug combination registered as PrEP in South Africa is tenofovir and emtricitabine – widely known under the brandname Truvada.

Glossary of terms

Adherance – refers to taking any form of treatment as prescribed, without missing a dose

Clinical trials – refers to research studies involving human subjects

Demonstration sites – serve two purposes: 1. They enable the country to learn enough about implementation issues related to PrEP so that the transition is more feasible between research (including demonstration project research) and the wider expansion and institutionalisation entailed in scaling up implementation. 2. They enable the World Health Organisation (WHO) to extract generalisable information for the eventual development of guidelines for PrEP delivery.

Serodiscordant couples – intimate partners, regardless of gender, such that one is living with HIV and the other is HIV-negative

Substantial risk – anyone who engages in regular condom-less sex with persons of unknown HIV status or who are HIV-positive is at greater risk of contracting HIV.

Why I take PrEP

Nomnotho Ntsele (20) is a second-year student at the Durban University of Technology. She also volunteers as a peer educator.

When I first heard about PrEP, I thought it was meant for promiscuous people – I did not think it was for me at all. The fact that it was only available to sex workers supported my assumptions. I did not understand that anyone could be at substantial risk of contracting HIV, especially young women my age. My opinion changed when I attended the Youth Dialogue in Prevention at SECTION27 in September, where I learnt a lot more about the science of PrEP, and realized that even I am at risk of contracting HIV.

I then started reading more about it, and incorporated the information I learnt in my peer-education work. I started telling other students in my institution about this other option for HIV prevention. Following my residence visits and talks, I was approached by students in serodiscordant relationships (where one partner is HIV-positive and the other HIV-negative) asking about where to access PrEP. I remembered that at the Youth Dialogue, we were told that the Centre for the AIDS Programme of Research in South Africa (CAPRISA) and the Wits Reproductive Health & HIV Institute are currently offering it to young women who are not part of clinical trials. I therefore referred them to CAPRISA.

As I myself am in a long-distance relationship, I realised that I am also at risk of contracting HIV. Moreover, I was curious to know how this PrEP pill works. I wanted to be able to address students’ concerns about side effects and other related questions. And maybe PrEP was for me too?

My decision to take PrEP almost broke my relationship with my boyfriend. He works in the north of KwaZulu-Natal, and we do not see each other often. He felt that my decision to take PrEP was motivated by a lack of trust in him. He wanted to leave me, and also accused me of cheating on him, saying that was the reason I’d decided to take the pill. After several arguments trying to explain to him why I’d decided to take PrEP, he went to a pharmacy to do blood tests, including an HIV test. He told me that he was ‘clean’. I continued to take PrEP.

I must say, it wasn’t easy in the beginning. Taking a pill when you are not sick is not child’s play. It doesn’t help that I suffered mild side effects – nausea, and a bit of dizziness – but they all subsided within a few days. I started taking PrEP during my exam preparations, so I used to take it every day at 21h00. Now that I have finished writing, 21h00 is no longer convenient for me. I take it earlier now.

A lot of my peers at university would benefit from PrEP. Most of them are dating celebrities, or guys who have money. I imagine some of them think they are ‘exclusive’, but this would be a lie. Though if CAPRISA didn’t provide PrEP through its study clinic, and I had to pay for it, I wouldn’t have considered it. I already have competing needs – buying PrEP with my financial aid money would be the last thing on my mind. The government should provide PrEP to everyone who needs it.

Keiskamma Trust, an Eastern Cape based health organisation, praised around

Keiskamma Trust which survives ondonor funding is facing a crisis as money dries up for it Community Health Worker programme

the world for its incredible community work which has saved thousands of lives, is in danger after funding cuts. Ntsiki Mpulo spent time with a community worker to give us a glimpse into the important work they do in a province where the health system is unable to deliver.

“The magnitude of the HIV/Aids challenge facing the country calls for a concerted, co-ordinated and co-operative national effort in which government in each of its three spheres and the panoply of resources and skills of civil society are marshalled, inspired and led.”

This was the rallying call of the judgment in Minister of Health vs Treatment Action Campaign, in 2002. Following years of AIDS denialism, the court upheld the constitutional right of all HIV-positive pregnant women to access healthcare services to prevent mother-to-child transmission of HIV (PMTCT).

Dr Carol Hofmeyer, a medical doctor who had settled in the Eastern Cape town of Hamburg, heeded the call, and began administering lifesaving ART (anti-retroviral therapy) to the people surrounding the village. The programme started with a handful of community health workers supporting the AIDS hospice. They now have 80 community health workers who serve 47 villages and 13 clinics in the Amathole District area surrounding Hamburg, including Peddie and Nier Village.

Nontobeko Twane, a community health worker based in Mgababa village, started as a volunteer at Keiskamma Trust in 2006. She received training as a community health worker, and was then employed on a permanent basis. She hasn’t worked elsewhere, and the stipend she receives is her only source of income.

She tested positive for HIV in February 2008, and was initiated on treatment in May 2008. She has steadfastly taken treatment since that day, and continues to do so today. She understands the challenges related to taking chronic medication for the rest of her life, and is thus able to provide the support that her patients need.

She is based largely at Keiskamma Trust, which is the temporary home of Hamburg Clinic. The Trust stepped in and offered its premises as a temporary measure when the 30-year-old Hamburg Clinic building collapsed in 2012. Through this collaboration, the Keiskamma Trust community health workers have developed a close working relationship with the clinic sisters.

The services provided by the Keiskamma community health workers include home-based care visits, regular reporting to nursing staff on critical cases, and monitoring adherence to (but not limited to) ARVs and TB, hypertension and diabetes medication. Now, these services are in jeopardy, as the Keiskamma Trust faces a funding crisis.

Following the termination of a donor-funding agreement, the trust is no longer able to pay the community health workers who are part of the programme, which requires R1.2 million per annum in operational funding. The Eastern Cape Health Department has agreed to provide sufficient funding to pay 10 community health workers per annum. This falls far short of the funds required to pay stipends for the 80 community health workers in the programme.

The Keiskamma community health workers are the cornerstone of the success of the health programme in the area; without them, women such as 27-year-old Zukiswa (name changed) face certain death.

Zukiswa lives in Mgabaga Village with her husband of five years, Moses (name changed), and her two children – a three-year-old daughter and a one-year-old, son Her husband works as a mechanic, fixing cars in the yard of their small home. Zukiswa does not work, and the family’s only other source of income is the child grant received from the state. However, this is insufficient to feed the entire family; it covers formula and nappies for the youngest child, and a modest amount of food. Zukiswa’s emaciated frame is testament to this fact.

She says that she has always been slight in build; but what is clear is that Zukiswa is wasting away. She tested positive for HIV in 2015. She was initiated on treatment, but has since stopped taking her medication. Her reason for not taking her medication is that there is no food in the house.

Zukiswa cowers on the corner of the couch, the only piece of furniture in the lounge, while Nontobeko perches on a bench opposite her. Though it is not stated openly, it is clear that Zukiswa is afraid of her husband. Moses has also tested positive, but has opted not to start ARV treatment. This increases the chances that Zukiswa a will become re-infected if she does not resume her treatment.

On numerous occasions, Nontobeko has explained to Zukiswa that taking her medication means that she will increase her life expectancy, so can she raise her children. She has on occasion requested support from the Department of Social Development, to provide food parcels; however, this has only been a stopgap measure. And as Zukiswa continues not to adhere to her treatment, Nontobeko is fearful that this young mother will not survive the year.

Nontobeko, like the other 80 community health workers employed by Keiskamma Trust, provides a lifeline for the women she looks after. Without her, many would be unable to access health care at all.

Even for a woman of faith, breaking bad news is never an easy thing to do.

When Sister Krystyna Ciarcińska called a meeting for the 30 caregivers of the

Sporting their blue golf shirts are some of the Koinonia Orphans caregivers who havechanged the lives of at least 900 children in 13 villages in Uzimkhulu. From left areNtombovuyo Langa, Bongekile Dlamini and Gloria Tsezi. In front is Lodiwe Ndzimande.

Koinoina Orphans Project in rural Umzimkhulu, KwaZulu-Natal at the end of winter this year, she did so with a heavy heart.

“I was so sad and I didn’t know what I was going to say to them,” she says, remembering that day. In her hand was the letter from the South African Catholics Bishops Conferences (SACBC) notifying the Lourdes Mission, where Sr Krystyna is a consecrated sister of the Koinonia John the Baptist community, that funding for the two-year-old Koinonia Orphans Project she headed up, would run out by the end of September.

“Sometimes when we call special meetings it’s because we have been given unexpected donations of blankets, mattresses or something, so the caregivers were very excited. But instead I had bad news to tell them; it was terrible,” she says.

That official funding has dried up and it has been a blow. But the Lourdes Mission has fought to continue with the project even though for the past few months paying the R35 000 a month bill it costs to run the project has never been a certainty

“Prayers and providence,” says the irrepressible Sr Krystyna with a smile, at how donations have materialised. Still, she’s only too aware that the long-term sustainability of the project is in jeopardy.

The Koinonia Orphans Project has over the last two years become a vital lifeline for over 900 children registered in the project and their families from the 13 villages that surround the mission station. The 30 caregivers who receive a stipend for their service also rely heavily on this source of income.

The project that started in October 2015 focuses on supporting children in vulnerable households, many are AIDS orphans. It’s part of the Catholic Church’s response to HIV/ Aids that was officially started in the country in 2000.

Withdrawal of PEPFAR funds

The SACBC has been a beneficiary of the United States’ Pepfar (President’s Emergency Plan for Aids Relief) funding since the fund came into being officially in 2004. The shift in foreign policy under the Trump administration has however, sparked concern for critical long-term financial support from Pepfar.

According to Mrudula Smithson, director of the SACBC AIDS Office, Pepfar funding to the SACBC has been reduced by around half for the next financial year. While Smithson says they don’t disclose the actual amounts, she says their projects have been hit badly.

“We receive three streams of Pepfar funding for our projects that all focus on

The home headed by ChristinaMtolo (far right), her daughter GloriaMbhele (far left) and with themGloria’s children Anelisiwe Mbhele,their friend Thembalethu Tshabalala,and Gloria’s other child Senelweko.They are one of the families that arepart of Koinonia Orphans Project.

orphaned and vulnerable children – all three have been severely affected while our target of the number of children we want to reach has increased significantly,” she says.

Smithson adds that the SACBC Aids Office programmes currently reaches 45 000 children. “We are very concerned that the small projects around the country especially now have to find their own way to fund their programmes or they’ll have to shut them down,” she says.

At this point, Pepfar will continue to fund projects in South Africa till September next year. In May, the US Embassy in Pretoria announced that Pepfar would support South Africa’s HIV/AIDS and TB programmes till September next year and would support the National Strategic Plan (NSP)’s 2017-2022 programmes for HIV, TB and Sexually Transmitted Infections. An additional U$51-million in funding was approved to support South Africa’s voluntary male medical circumcision programme. Since 2004, Pepfar has invested over U$5.6-billion in South Africa.

A million realities away from decisions made in boardrooms in capital cities, Koinonia Orphans Project caregivers must still get on with visiting families under their care.

Giving care

With basic training in nutrition, hygiene and counselling, caregivers help make sure people adhere to their medicine regimes and have food to eat, often they share from their own meagre provisions. They cook and clean, fix homesteads, and help plant food gardens. They also help register children for birth certificates and identity documents. They do school monitoring, help with homework and ensure that children have school uniforms, without which they’re not allowed to attend school.

Another prong of the Koinonia Orphans Project has been twice yearly voluntary HIV/AIDS testing and counselling days targeted at children but also reaching adults who live in communities surrounding the Lourdes Mission.

In their last testing campaign held in August they were able to test 400 people, working in collaboration with local clinics that provided the pin-prick test kits.

“Knowing their status early is important so that they can start treatment early,” says Gloria Tsezi, one of the Koinonia caregivers in the village of Moyeni.

Tsezi visit homes where the burdens facing families is heavy. At the home of Busisiwe Khambula and her three children, Tsezi looks on as Khambula cradles in her lap the head of her eldest of three children, Olwethu (18). He is severely disabled and often suffers from uncontrollable fits.

“Sometimes the clinic tells me there are no medicines for his fits, then I have to go to Rietvlei Hospital. Sometimes I just lie him down flat and wait till the fit is finished – it hurts my heart too much,” Khambula says. Transport to get to the hospital costs her R200.

Tsezi and Khambula also tell of Khambula’s allegedly abusive relationship with the mostly absent father of her children. Abuse is another load that women in this remote district of KZN must carry.

Tsezi says: “He threw away all her pots and burnt all the children’s documents so I had to help get new identity documents for the children.

“I come to look after Olwethu and the two smaller children, Jabulile and Simthanda, when Busisiwe must go out. I give Olwethu soft porridge and milk, it’s the only thing he can eat – he likes it,” she says, proudly wearing the sky-blue Koinonia golf shirts that have become the uniform of the projects’ caregivers.

A difficult life

A few villages away in Riverside, a mother tells of her trials of living with HIV and the devastation of some years ago when she found out that one of her children, an 11-year-old girl, is also HIV positive. The child has also suffered from TB, she says.

They have a vegetable garden but sometimes there isn’t enough food for a square meal – essential for those taking ARVs. Riverside was also without water for nine months this year.

In another village Tryphina Mkalane is grieving for her daughter who died just months ago. It’s added two more grandchildren under her care, bringing to five the number of young ones who live in her rondavel.

One of the children turns 18 soon. Mkalane worries she will not find a paying job. At the same time it will mean she’ll lose a social grant that goes towards paying for groceries, transport and school supplies.

“One of my other daughters is in Durban. She’s been trying to find a job for over a year now. We send her the grant money so she can pay rent in Durban,” says Mkalane, speaking through her caregiver, Lucinda Dlamini.

For Sr Krystyna, who grew up in Poland and arrived in South Africa from Spain first in 2013 then permanently since April 2014, helping to lighten people’s challenges bought on by the collision of multiple miseries has become part of her life’s work.

Every sad story breaks her heart, but not her faith. Her childhood fascination with Africa has turned into the place she now calls home. In return the community has embraced her as their own, there are even little girls bearing her name – spelt the Polish way – the mothers and the nun say with a laugh.

It was in 2010 that the arduous process of rebuilding the Lourdes Mission and their cathedral first started under invitation by the local bishop to Father Michal Wojciechowski, who now heads the Koinonia John the Baptist community in Lourdes.

The mission station and cathedral date back to 1895. They were built by Trappist monks but had been given over to neglect and abandon for decades. Brick by brick the community has worked to rebuild the twin-towered cathedral and the living quarters for the handful of nuns and brothers who keep the mission alive.

There’s still a mountain of work to be done, like restoring a burnt out convent and an adjoining boarding school.

Every day there are new needs that present at the Lourdes Mission’s doors. The sisters, brothers and Father Michal open their arms to it all: a woman and her children who have gone three days without a meal; the shattering news of a teenage suicide; someone needing help with homework or just seeking out comfort and a prayer – and of course, the on-going question of how to fund the Koinonia Orphans Project for the the long-term.

But the cathedral is a beacon of joy and spiritual light. It’s packed to capacity for Mass each Sunday, the mission’s food garden and orchards now thrive as a symbol of new hope. Funding is sorely needed here; faith in action though, grows with abundance.

BURDEN OF THE GENERATIONS

When the rain sweeps in over the hills of Umzimkhulu and the winds follow, the rolling hills turn to mud and muck. Mist and chill wrap around rondavels with little forgiveness.

95-year old Alexsia Njilo can barely look after herself and says here two teenage grandsons don’t give her much assistance.

home. On a soggy, cold afternoon, the nonagenarian tends a steel teapot warmed on burning firewood in the centre of her rondavel. In-between she shoos away chickens pecking on the dung-mud floor, also seeking the mercy of warmth. Njilo lives with two teenage grandsons here that she mumbles are no good and no help to her. They come and go as they please, she says.

“I won’t cook tonight because they will just eat all my food,” she says in Zulu, I will drink tea for my dinner, she says.

So much adds to Njilo’s hardships: maladies of old age; few opportunities or hope for young people in this remote village and little infrastructure and resources to make life easier for a family living in poverty in the Harry Gwala district. The district has been in the news of late for political killings, cases of corruption and municipal mismanagement, also lack of infrastructure and pressing needs for basic services.

Njilo’s is one of the vulnerable households under the care of the Koinonia Orphans Project, run by the small community of consecrated sisters and brothers from the Catholic Church’s Koinonia John the Baptist community, based at the Lourdes Mission in a neighbouring village.

The 95-year-old’s Koinonia caregiver is the newest and youngest in the project: 19-year-old Thembile Dzanibe, who joined them in the middle of November.

Dzanibe finished her matric in 2016 and had been looking for work ever since.

“Many young people are in the same situation as me. Here in the rural areas there are no jobs or opportunities, nobody has work, they just have to sit at home. I applied for bursaries to study but I wasn’t accepted,” she says.

Added to this she says there’s a growing drug problem and a deep-rooted crisis of alcohol abuse that often leads to violence and criminality. Teenage pregnancy is also common and HIV/AIDS continue to ravage the community.

As a born-free, Dzanibe had hopes of studying to become a teacher. She says: “Actually my dream is to open a crèche, I love children.”

But both dreams have stalled.

“I’m happy to be a caregiver this year, I think I will be able to look after Gogo and the two boys, even though I don’t know if they’ll listen to me,” she says, sitting inside Njilo’s hut.

Gogo’s face does light up to greet her young caregiver but she’s also lost to tiredness and her own thoughts.

For Bertha Mia, the co-ordinator of the Koinonia caregivers, the role that Dzanibe has committed to is a big one.

“You need patience to do this job; you also need to treat every person with dignity. You have to work hard and be honest,” says Mia.

Dzanibe nods as Mia passes on this advice.

Community caregivers take on an intimate, sometimes almost impossible task. They’re a pillar that props up the most vulnerable in society, yet as in the case of the Koinonia Orphans Project they’re also first to fall when funding dries up.

In this issue: A profile of Free State MEC for Health Butana Khompela; A guide to making AIDS councils work; TAC on the state of our hospitals; Doctors blow the whistle on orthopaedic nightmare; A special focus section on healthcare in the Eastern Cape; Linda-Gail Bekker, Peter Piot and other experts on the state of the HIV and TB response on WAD 2017; Mark Heywood on state capture and the right to health; The latest TB stats; A close look at who is funding TB research; An inside look at PrEP at tertiary education facilities; and more.